SURVEY RESULTS: Patient Experience with Doctors

In July 2014, ProHealth conducted a survey about patient experiences with doctors.

For patients with illnesses that are not universally accepted as “legitimate” among conventional physicians, a trip to the doctor can be fraught with difficulties. Patients typically ask themselves, “Will the doctor listen to me?” “Will the doctor make any helpful suggestions? Or will the doctor simply ignore my concerns?”

Problems arise even when a trip to the doctor is not imminent. Because doctors, in general, spend little time with their patients it may take years to get a diagnosis and appropriate treatment. During this time, the patient may experience a steady decline, along with the frustration of not knowing what is causing it.

These kinds of difficulties have often been described by patients, who report that a trip to the doctor is among their most stressful experiences.

A total of 229 people took the survey. Of these, roughly half had a primary diagnosis of fibromyalgia. A little over 35% had been diagnosed with ME/CFS, and about 12% had been diagnosed with other chronic illnesses, including scleroderma, rheumatoid arthritis, lupus, diabetes and hypothyroidism.

A significant percentage of the responders had been ill for more than 20 years (32.5%). But, with the exception of three people, all had been ill longer than two years.

The largest group of the responders (41%) waited between two and four years to receive a diagnosis. Twenty percent, however, had to wait more than 10 years to be diagnosed. Roughly half (47.6%) saw two to four doctors before they were diagnosed. A little over a quarter (25.8%) saw between five and seven doctors. Nearly 20% saw more than ten physicians before getting diagnosed.

Despite the complexity of their conditions, only 36% of the survey responders were being treated by a specialist. The majority (64%) were not. Perhaps in keeping with the lack of specialist care, most responders made relatively few visits to the doctor. The majority (42.7%) had made only one to four visits to the doctor over the course of the previous year.

The low number of visits correlates with time spent with the doctor. Thirty-eight percent of the survey responders said their doctor typically spent less than 10 minutes with them. Nearly 40% said their doctor spent between 10 and 20 minutes with them. Less than a quarter reported consults lasting more than 20 minutes.

While half of the responders said they felt their doctor listened to them, only 23.8% reported that their doctor was “very knowledgeable.” Nearly 40% reported “minimal knowledge” and roughly 10% reported that their doctor did not feel their illness was real.

The percentage of doctors making helpful treatment suggestions correlated precisely with how knowledgeable the doctor was, with 23.7% reporting that their doctor usually made helpful suggestions. Nearly half of the responders (46.4%) said their doctors never or rarely made helpful suggestions.

Follow-up was sporadic. Only 37% of patients received follow-up, while 48.1% never or rarely received follow-up. The majority (64.3%) of patients did not receive a call back from their doctor if they had a question.

Lack of follow-up, combined with minimal amount of time spent with patients, limited specialist care, and general lack of knowledge on the part of physicians, resulted in a low rating for medical care. Most patients (51.6%) rated their medical care as “poor” or “very poor.” Roughly 25% reported their care as being “good” or “excellent,” and about 6% reported not receiving any care at all for their primary diagnosis.

In general, this survey reveals that while many physicians may have a good bedside manner (i.e. they listen well), they do not provide the services that are essential to chronically ill patients. Most do not make helpful treatment suggestions, which is most likely due to minimal knowledge of their patients’ condition.

The paucity of doctors specializing in ME/CFS and FM no doubt contributes heavily to patient dissatisfaction, leading to relatively few visits, and, for some patients, no care at all.

For a population with chronic illnesses, the lack of adequate care can be devastating. While this survey was relatively small with only 228 responders, it confirms the results of larger surveys which also reveal inadequacies. Based on this and other surveys, it is clear there is a failure on the part of the medical care system to care for this population.

I am 39 years old and was diagnosed with fibromyalgia and IBS along with depression 19 years ago. More recently after attempting suicide, I was diagnosed with severe depression and anxiety. I have no insurance since having my son and having to quit my job in 2006. Since then, it has been a struggle trying to find a doctor that 1) I can afford to self pay 2) to find a doctor that believes my illness 3) understands my illness, and 4) who can and will write the prescriptions I need and had been on for so many years that had been working. I usually have to just do without which leaves me in severe pain and depression while trying to raise my 2 children. I'm at a loss as to how to make these doctors understand that this is real and we are real people, not junkies. Thank you so much for this video. I cried because it was me in that video.

Did we honestly need a survey to tell us this news? I have had this illness for 40 yrs. and for 40 yrs. not much in the scheme of things have changed. The only Dr thinking outside the box is Dr. Cheney...and I have been to quite a number of Doctors.

I saw 16 doctors and other health care providers during my journey to recover from diagnosed CFS and suspected fibromyalgia. Most of them were MDs. I was lucky because my primary doctor (MD, internist and allergy/immunology specialist) through all of this diagnosed me within 6 months. She was an excellent diagnostician, who would spend about 90 minutes with me each visit.

However during my journey, I encountered plenty of attitude. One MD repeatedly questioned whether I was having problems in my life and needed to see a psychiatrist, each time I had a new symptom. Yet upon deeper investigation, we always found a medical reason for the symptom, often an unusual one.

A top doctor (MD, GP) my parents consulted said there was no such thing as CFS, it was just things wrong that had not been found. Obviously, but this did not help with family sympathy.

In a way, the worst was when I went to a major medical center for diagnosis. I felt I was dying and I worried that a worse diagnosis had been missed. The many doctors at the medical center confirmed my CFS diagnosis. But the whole time, they acted like I was taking up the space of somebody really sick, somebody perhaps dying. Not a faker exactly, or a hypochondriac, but just that my illness was not worthy of their time and attention. They ended by telling me, "you're old, get used to it".

There were two ironies out of this experience at the major medical center. First, it turned out I had 5 simultaneous infectious illnesses, two of which can kill you. I found out much later that the person who gave me one of these, died 3 months later of his illness. So, potentially I was dying and I was accurate in what I felt at the time. The second irony was that other than dealing with the infections, the single most helpful thing for me turned out to be hormone balancing of multiple hormones. Yet 4 top endocrinologists saw me, and used me as a teaching case, and missed all of it.

The next day, I worked with a OB/Gyn on one hormone treatment and in 24 hours, my fibro pain of 8 years melted away, totally gone. I had higher energy and focus again.

A later endocrinologist scared me away from other treatment for years because she told me the treatment was risky and I could end up in life-threatening condition with it. Yet, later I tried a safer version of it,with a naturopath, and that seems, after 14 years, to be the last piece I needed.

MDs, the attitudes are not needed. I have met or talked with many people with CFS along the way. With only one exception, they were avidly trying almost anything to get better. They were well-informed about CFS, often better informed than most doctors.

Another punch line to my story is that the MD who kept asking if I needed to see the psychiatrist but found things, and rolled her eyes at me at every visit about any alternatives I used, now offers two treatments that I told her about, to her patients. Yet, never an acknowledgement that I had a point, and still the eye rolling. As a result, I am in the process of switching to a new MD I reently found who is expert in CFS and does incorporate alternatives, whatever works best.

I am deeply thankful to all those providers who helped me, including MDs, but my path would have been a lot easier with more positive teamwork attitudes, and more openness about less traditional tests and treatments. The derisive attitudes were being unloaded on me at a time when I could barely walk or think, and was in fear for my life for months. Compassion please.